In 1992, the United Nations announced December 3rd as the International Day of Disabled Persons. The commemoration was established to acknowledge people worldwide living with disabilities; as well as promote the rights and well-being of people with disabilities in all spheres of society. This year’s theme focuses on empowering persons with disabilities for inclusive, equitable and sustainable development as part of the 2030 Agenda for Sustainable Development. The disability employment gap – the difference in the rate of employment of disabled people and non-disabled people – has remained stubbornly at about 30 percent for the past decade. This is a stark and alarming statistic. Marking this occasion gives us an opportunity to ask ourselves important questions about the reasons why progress has been so slow and to identify barriers that still need to be overcome.

The first step entails educating ourselves. Our concept of disability is often very narrow and/or incorrect. For example: Did you know?

• Over 80% of disabled people globally acquire disability later in life
• Fewer than 20% globally are born with a disability
• Less than 8% of global disabilities require the use of a wheelchair

Many disabilities are invisible and can include mental illnesses, learning or development disabilities and even long-term health conditions such as diabetes, heart disease and cancer. So perhaps a starting point could be to change the language around disability and that will in turn help us to reduce the stigma around it, while encouraging people living with disabilities to be open and ask for support when required. By being open about our challenges we help create a more level playing field; and that allows everyone to perform to the best of their abilities, irrespective of their situation.

Our colleague Mark Berry, an Avanade Manager in the U.K., has decided to share his personal story to help increase awareness of people living with, and thriving despite, their disabilities. Mark lives with an Autism Spectrum Disorder (ASD). Autism is a spectrum disorder, meaning there’s wide variation in the type and severity of symptoms people experience. It includes Asperger’s Syndrome, Pervasive Developmental Disorder (PDD), and Rett’s Syndrome, among others. We applaud Mark’s courage and honesty in sharing his challenges and triumphs in living with ASD. We hope it leads others to share their personal stories as means of increasing awareness of our peers living with disabilities.

What’s your experience been as someone affected by ASD?

I refer to myself as having Asperger’s. Although the diagnosis of Asperger’s doesn’t exist anymore, I think it’s helpful as a differentiator from traditional notions about autism and ASD.

I was diagnosed in about 2005. I knew something was wrong. I didn’t seem to fit in. I was interested in different things than my peers, socializing was very difficult, and I found maintaining relationships very challenging. But I couldn’t quite understand why.

When I was diagnosed things clicked into place; the things I was really good at, why I struggled in other areas, the career I chose and why I am particularly suited to it.
As I started to understand my condition, I realised the things I was doing, e.g. ‘The Mask’ and the sheer mental effort needed to appear ‘normal’ - were things that ‘normal’ people didn’t do. This was a revelation, but also very scary.

Asperger’s is a hidden condition. Most people would not have a clue that I have it. When I disclose it, most people’s response is “ooh I wouldn’t have known”. I’m never quite sure whether it’s a complement? After all, who wants to be told “wow……you’re really normal”?

You mention “The Mask,” what is that and what does it mean in practice?

Everyone wears “The Mask”; it’s a version of themselves they present to family, colleagues, friends, clients, etc. Each “mask” may be slightly different, but they are basically small variations of themselves.

For myself, “The Mask” is what I use to appear ‘normal’. I compare it to a great actor playing King Lear, challenging and mentally exhausting. Unlike an actor, I cannot walk away from it since I’m playing the part every waking hour of every day and, as a consequence, there is a huge mental toll that people do not see.

Social interaction for the person living with ASD are not innate; they are learned. I have a set of conditions and responses saved like a giant lookup list. It takes a huge mental effort to work this way and the list needs constant updating with new rules and situations.

Tiredness, stress and pressure can mean “The Mask” slips at times. For myself, that usually entails saying things in the wrong way. I can come across pedantic, direct, or at worst condescending, rude, offensive, arrogant, when that was the absolute furthest from my intention.

How do you deal with this challenge?

Firstly, every ASD person is different. What works for me may not work for others; there is no one size fits all. When I feel comfortable in a situation I have the ‘Asperger’s discussion’, a bit like the sex talk with your parents, uncomfortable for both, but necessary. This discussion comprises the fact that I have it and what it means in practice.

I bring my speech cadence down because I am filtering everything I say through the lookup list to make sure it’s said in the right way. This can sound condescending. Sometimes I make mistakes and appear to be rude or arrogant, but that is never my intention. I sometimes don’t make eye contact or close my eyes in meetings, not because I’m not paying attention, but because I’m paying extra attention by blocking out all other stimuli. On the flip side, you get someone who is reliable, dedicated, honest (to a fault), passionate, has great attention to detail, creative, accepting of others’ differences and good at what they do.

People with disabilities are always adjusting behaviors to fit in. My “reasonable adjustment” is for people to give me the benefit of the doubt when I slip up. People can choose to be upset, or to ignore things, but I prefer they tell me that something has come across wrong. I will learn from that.

Is there any advice you would give to other people living with ASD?

I think we are still in the early days of acceptance of people on the spectrum. Being a hidden condition, I believe there are parallels to other illnesses or conditions. There’s still a high level of stigma associated with so many illnesses and disorders. HIV is just one example.

Things are getting better. Many employers like Avanade (and IT in general) are recognizing the unique talents that people on the spectrum can bring. But don’t forget, there is a huge number of people who are not even aware they may be autistic, so acceptance and inclusion shouldn’t be conditional upon diagnosis or ‘coming out’.

I am a person with Asperger’s. I’m not disabled by my condition; I am disabled by peoples misunderstanding of it. I am proud of my unique talents and proud of being an advocate of ASD in the workplace.